Awareness: A Personal Memoir on the Declining Quality of Life in Alzheimer’s
Published Nov 1, 2002 · M. Friedell
Dementia
22
Citations
2
Influential Citations
Abstract
I am 61 years old, a retired professor; I live alone. At the University of California Santa Barbara I used to teach a course called ‘The Social Psychology of Affliction’. One of its inspirations was the book Suffering by radical Christian theologian Dorothee Soelle (1975). Compassion means understanding and overcoming the tendency to blame or ignore the victim and refusing to worship a false God who abets this. It means healing interventions on a personal and societal level, and when nothing concrete can be done, to be in solidarity with the afflicted person and help him bear his burden. In 1997 what seemed to be a progressive attention-deficit disorder led me to a neurologist. The initial MRI suggested frontotemporal dementia, but in August 1998 a PET scan at UCLA led to a diagnosis of Alzheimer’s. Since then my clinical presentation has become more characteristic of AD, with impairment of visual processing and slowness of thought, but without marked frontal symptomatology. I have pioneered the application of brain-injury rehabilitation concepts to dementia, presented my studies at conferences, and recorded my journey in essays (see my website: http://members.aol.com/MorrisFF). Recently, I have been experiencing decline; vital active living feels more remote, as does the past when I used to be ‘normal’. It increasingly takes all my mental energy to do a creative writing project like this article and otherwise just get through the day. I evaluate myself as having decreased quality of life (QOL). I ask myself: is it worthwhile to monitor my QOL, or does awareness have an unreasonable cost? If it is indeed worthwhile, how can I assess and monitor my QOL, both as a basis for improving it and for making ultimate decisions? It is an attempt to address some of these issues that consumes the remainder of this personal account. de men tia